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It will take a great deal of research to find a cure for ALS. And research takes money. There are many ways that you can help raise money and awareness for the fight against ALS - participating in or organizing a WALK for ALS, bottle drives, car washes, concerts, thrift sales, special events, raffles, etc. If you would like to be profiled, please go to Feedback and send us an email telling us what you are doing to make a difference.

Here are profiles of some young people who have made a difference.

2010 Youth Engagement Retreat

The ALS Society of Canada held its first-ever Youth Engagement Retreat this past September at the Hockley Valley Resort in Orangeville, Ontario, bringing together youth from across Canada who have been directly affected by ALS in order to promote peer support and positive coping skills.

The event ran from Friday September 24 to Sunday September 26 and included a gathering of 16 youths aged 15 to 24 who have been directly affected by ALS in their families, along with ALS Canada staff, three volunteers under the age of 30 who have lost a family member to ALS and a psychotherapist. The gang got to know each other right away by sharing personal stories about how ALS has affected them and their families. Friendships and life-long bonds were quick to form among the entire group.

“I felt as if someone finally heard my voice for the first time. After all these years of ALS being a part of my normal life, I have never spoken with someone who feels the pain, knows the complete change of life and knows the terminology,” one of the youth explained. “That is something that will stick with me my whole life.”

One of the goals of the retreat was to show these youth they are not alone, and to have them interact with others who have been or are going through the same thing as them, allowing them to build a solid peer support network. As one of the youth commented, “I think we are all a family because we are all connected in this one way. We have all been affected by ALS.” Another goal was to engage the attendees to help ALS Canada staff in the development and implementation of an initiative for 2011, aimed at all youth affected by ALS.

Over the course of the weekend, youth were able to let loose (for some this was also a break from caregiving) and enjoy themselves through physical activities such as a ropes course and even a “Survivor Challenge.” In between games, ALS Canada facilitated a lot of group discussions and brainstorming sessions to come up with ideas for the future initiative and how to best meet the needs of other children affected by ALS. Participants developed a number of plans to be put into place in the near future, including their own involvement in education, support, awareness, advocacy and fundraising.

“The inspiration and motivation received here gave me that push that I needed to get out there and spread the word,” explained another youth who attended. “Unlike most participants, who I now call my friends, I hadn’t contributed or participated in any other events, but after seeing and meeting with these people and hearing their thoughts, I realized that I can make a difference.”

ALS Canada staff are thrilled with the success of the retreat and the impact it has had on everyone involved. While emotionally draining, the retreat instilled hope and inspiration in everyone who attended.

Jane McCarthy, director of services and education for ALS Canada said: “The goals of the retreat were met and then some. Participants bonded incredibly fast and were pumped to work together to identify needs of youth in the ALS community and possible strategies to address them. It was clear this group of young people wanted to be engaged to make a real difference for others. It was truly an honour to be able to provide them this forum to connect with one another face-to-face and see the formation of friendships that will last a life-time. It is hard to find the words to describe exactly how meaningful this weekend was for all involved, including the staff and volunteers.”

After the event, a YouTube video was created by Kinga Njilas, one of ALS Canada’s dedicated volunteers who helped to organize the retreat. The video is an amazing photo slideshow which captures the spirit of the entire weekend in just a few minutes. The video is available at: http://www.youtube.com/watch?v=rFJDWqTO8Zw.

When his father was diagnosed with amyotrophic lateral sclerosis, 15-year-old Alex Walker-Smith made it his goal to raise funds toward a cure for this devastating illness. In 2009, he created a dance-a-thon at Hodgson Senior Public School. Together, they raised more than $11,500 for breakthrough ALS research. Now a grade 9 student at the Toronto Prep School, Walker-Smith created the ‘Dance for ALS’ with all proceeds going to the ALS Society of Canada. With the support of family and friends the event, held on Sunday May 30, 2010, raised more than $21,000!

The night featured raffle prizes such as a pair of Bon Jovi tickets, a weekend getaway at Hockley Valley Resort and Blue Jay tickets and the music was dj-ed by Walker Smith that even got the adults moving.

“The night was amazing, except it went by so fast,” said Walker-Smith. “It means so much to me that everyone in the community helped out.”

Fundraising efforts began at Toronto Prep School in April and got the entire school community, teachers and parents alike, involved. To spur on students, teachers and even the principal volunteered to do out-of-the-ordinary things for each level of fundraising achieved - from a teacher volunteer to shave his head to the principal wearing a dress for a day.

“I think the most rewarding part of holding events like these is knowing that the money raised would be used to find a cure,” says Walker-Smith. “It is also great to know we are spreading awareness in the community.”

Walker-Smith’s younger brother, Dylan, also played a major role in fundraising efforts. At the age of 12, the younger Walker-Smith opened up about his personal experience with ALS to his grade 6 classes at Maurice Cody Public School. Together, his classmates raised an amazing $7,200.

“I was really happy with how things turned out,” said Dylan Walker-Smith. “I’m amazed by all the help and support.”

“I’m really proud of Alec and Dylan. They’re pretty special kids,” beamed their mother, Jan Walker following the event.

Walker-Smith wishes to continue this event and see it expand. He also wants to continue his work with ALS Canada by attending the youth workshop held in September. When asked about the involvement of young people in advocacy work, Walker-Smith replied, “I think that young people getting involved is a key thing to helping find a cure and raise money to go to research. Without them, I don't think it could be possible at all to get anywhere.”

With the slogan, START DANCING, STOP ALS, the Walker-Smiths are a great example of the young people taking action to combat this debilitating disease.

*Alex's father passed away from ALS in June 2009.

Hants North Rural High School shows their support for those affected by ALS

Mike Watson, a veteran living with ALS, continually raises awareness about the disease in his community. He is also a regular volunteer at Hants North Rural High School, a small, 300-student school in East Gore, NS, where his 16-year-old daughter Michelle attends. This year was the school’s third annual WALK for ALS, which raised more than $500.

Before the Walk, all of the students received an ALS T-shirt to wear so they could show their support for Michelle, her father and others affected by ALS. When the Walk finished, the entire student body organized to spell out ALS on the lawn, so an aerial shot could be taken from the roof by one of the teachers.

Student council helped organize this event and photograph, along with Mike and Michelle Watson and the school’s vice-principal, Dave Wiseman. The school may be small, but the picture gives a huge message, showing the power of a community to stand together to support one another.

Nine-year-old boy chooses fundraising for ALS over candy for Hallowe’en

Jonathan Vokes, a nine-year-old boy from Owen Sound, ON, made a decision this Halloween that not many kids his age would make - he decided to forgo the candy that he would get from trick-or-treating and instead ask for donations for ALS research.

His father, Larry Vokes, was diagnosed with ALS more than two years ago, and as his condition is worsening, his son is struggling to come to grips with the fact that he cannot make his dad better.

The idea to do something about it came from his grade four class’s lesson on Canadian heroes. Jonathan was inspired by the tale of another boy’s mission to make a change in the world and began to think about canvassing on Hallowe’en for donations, rather than candy. He enlisted the help of his school counsellor to write a letter to his mom asking for her permission:

Dear Mom:

I have been having a rough time thinking about dad. I want to help all of those others that have a rough time with a sick family member with ALS. I would like to see if I could go around town on Hallowe’en and after. Instead of asking for candy I would ask them to make a donation to ALS research.

I don't need any candy for any of this, all I would like is some money to donate. If you would let me do that, that would be great. I want to make life better in Canada by helping people buy medicine and helping them care for sick ones in their family. If this works out maybe we could ask the mayor to have a walk to raise money for ALS? The ALS society website has some ideas for this stuff. www.als.ca

If you would do this, it would be a big change in my life.

Your son, Jon

Upon reading the letter, Jonathan’s mother was overwhelmed with pride and helped him to decorate a container for donations with a picture of his father on it. Jonathan planned to go from house-to-house to hand out information about ALS, collect donations for research and invite people to go to www.als.ca where they can donate directly to the ALS Society of Canada.

GRADE FOUR STUDENT GIVES PRIZE WINNING SPEECH ON ALS

Each year, Aurora Grove Public School holds a school wide speech contest for the grade 4, 5, and 6 students. The best speeches from each grade 4, 5 and 6 class go on to present in front of the school and a panel of judges (two teachers and the principal) and the best speeches in the school are announced the same afternoon. Unlike many other students, Cara Torraville, a grade 4 student, knew what her topic would be right away. In February 2009 (while she was in grade 3), Cara’s grandfather, Ray Russell, was diagnosed with ALS. Cara’s speech entitled, “My Grandpa’s Fight with ALS” won her first place out of all the speeches in her school.

“I could not believe it when my teacher, Mrs. Ponikvar, told me that I had won first place... I felt so very happy and excited... [It] felt like the light from heaven had rained down on me,” exclaimed the nine-year-old.

Drawing on her personal experience with the disease, Cara painted a vivid picture about her grandfather’s life with ALS. Cara spoke about when her grandfather first showed symptoms of tiredness and then about the difficulty of getting diagnosed. “He went to four or five different doctors until the neurologist or the brain doctor sent him to Sunnybrook Health Centre,” she noted in her speech. She spoke to her classmates and teachers about the changes that she noticed in her grandfather as the disease progressed; the difficulty he experiences when eating, when breathing and when completing everyday tasks, such as opening the mail and doing up zippers.

Cara prepared her speech by researching ALS and rehearsing. So when it came time to present, even in front of the entire school, she felt just a tinge of nerves.

“When I was speaking in front of my classmates, I was very excited but also a bit nervous,” recalled Cara. “At the end, out of all the speeches in my class, I got the loudest applause from my classmates. All my classmates were very supportive of me.”

Cara’s parents, Barry and Michelle Torraville, and her grandparents, Ray and Marilyn Russell, were also in the audience when she recited her speech to the entire school.

“When Cara presented her speech in the gym... there was not a dry eye and Cara did not falter one little bit. She was cool and confident and very brave,” said Cara’s mother, Michelle. “My husband Barry and I are very proud of Cara for choosing this topic.”

“I was really impressed with how many day-to-day changes in my life Cara noticed and how clearly she spoke of these changes in a matter of fact way,” said Cara’s grandfather. “There was no hesitation in her presentation and it clearly touched every teacher and parent who attended the assembly.”

After hearing Cara’s speech, her teacher asked if her grandfather would speak to the class about ALS and how it affects on the body. It was an eye-opening experience for both her class and her grandfather, who was happily surprised by the participation of the class.

This past year, Cara and her family participated in the WALK for ALS at Fairy Lake in Newmarket, Ontario, raising more than $4,000. Her family plans to participate again next year.

“For awhile now, I have been thinking of becoming a nurse and helping people with ALS or working at the Hospital for Sick Children in Toronto,” said Cara. “I want to do this because I don't want anyone to have to go through ALS and I want to help kids get better from any disease.”

ALS Speech By Tia
May 15, 2009

A quick note....Rick...nor I...nor Tia's parents knew that she was going to address the student assembly with over 400 present! Quite a way to start your public speaking career. She told us afterwards that she was just shaking! It didn't show. We were all so shocked and crying at the time we asked her for the written copy of her speech to let it all sink in. Once again...we all can make a difference in people's lives no matter how young or old we are....Here it is....

Is everyone in your house healthy? When you get sick does your cold or flu go away?
I am Tia K. and I know first hand about a sickness that does not go away.
My grandparents are Rick and Joan and my grandpa has ALS.

Last year my grandpa and grandma moved into our house. When grandpa moved in he was walking with a cane. We made a bedroom upstairs for them and we got a special elevator to take him up and down.

Our garage got turned into a suite for my grandparents. It is very nice having my grandparents around. I get to visit them whenever I want. They come to my school to see my band and Christmas concerts. We made a special bathroom so grandpa wouldn’t have to step so high to get into a bathtub. The sink is built so his wheelchair will fit underneath it. There is a drain in the middle of the floor because there is no edges on the shower stall.

Grandpa has trouble walking so he has a wheelchair named Max. He can drive it to get the mail. Now he can even go to the grocery store. I like it that the store made a ramp so we can go on shopping errands together.

My grandpa can’t get into a normal vehicle anymore. They bought “the beast” for driving to appointments and farther trips. It is a big grey van that has a lift for hoisting grandpa and his wheelchair. It is like driving a bus. Grandpa can stay in his wheelchair and it locks into place. If you ever see them driving in town…make sure you wave!

My grandpa can’t sleep in a regular bed anymore because it is to hard to move over. He has a hospital bed with a trapeze over top so he can pull himself over. When grandpa can’t move himself anymore we have a Hoyer lift for moving him. It is like a crane for lifting him. My grandpa may have more trouble doing things soon. The ALS Society has a lot of equipment that can make things easier for him and us.

ALS affects everyone, not just the one who has it. My grandma works really hard to make things easier for grandpa. My dad did an amazing job changing our house for them. My mom usually cooks so that grandma and grandpa can do other fun stuff. My sister and I try to visit to check up on them. Many other family members help out in ways to numerous to mention. Without the help of family and friends things would be a lot harder for grandpa.

Lets give the helpers a round of applause…and an applause for the brave heart himself…Rick!

You are walking to help other people have easier lives and to raise money for research to cure this horrible disease. For this I want to thank you!

Katie's ALS Fundraising Garage Sale
May 10, 2009

Our six year old granddaughter had a dream last winter that she wanted to have a garage sale to raise money for ALS to help find a cure for the disease, and help supply equipment to ALS patients.

She won the hearts of us all when she persisted even this Spring that she still wanted to go ahead with it. Her big sister Tia who tirelessly worked on the day of the sale, Dad and Mom who supported their little girl's dream, family and friends came along side to make this happen!

On the day of the sale...it SNOWED!!! There she sat shivering away and sitting at the table with her sister in their winter clothes. She was selling her lemonade as a garage sale has to have lemonade! Never could we have imagined how her goal of $100.00 would be exceeded! We decided that there would be NO prices on anything but that people could pay what they deemed fair. Hot Dogs, coffee, lemonade and some hot chili were also available.

Everyone opened their hearts and wallets to make the day more of a success than any one of us could have imagined!

When the dust cleared and a very tired bunch of us added it all up we found that over $1,000.00 had been raised and the money will be all going to the ALS Society of MB. WOW!!!!! We are so proud of our grand girls who both withstood the cold and worked so hard to make this happen!!!!

Lindsay is a 3rd – year student in Health Sciences at the University of Ottawa, but is originally from Oakville, ON.

Lindsay’s father was diagnosed with ALS when Lindsay was in Grade 10. Ironically, before his diagnosis was definitive, Lindsay was studying the book Tuesdays With Morrie by Mitch Albom. It is about Albom reconnecting with his former professor, Morrie Schwartz, who has ALS, and learning a great many important life lessons from him during weekly visits.

Lindsay began participating in the Walk for ALS, and in Grade 12 decided to start her own Halton Walk for ALS, which is now held every Monday of the May long weekend in the Oakville / Burlington / Milton area of Ontario.

The first year of Lindsay’s walk raised $46,000 and the second year $85,000, and this past year raised over $83,000 through the participation of friends, family and some corporate sponsorships.

The start of the Halton ALS Walk…more than 500 participated last year

Kaitlynn Roberts

Kaitlynn is a Grade 11 student in Oakville, Ontario.

Some participants in “Peter’s Path” Walk for ALS

ALS runs in Kaitlynn’s family and it prompted her to do research on the disease as part of a school project. This helped her realize how bad the disease actually is and how much work will be required to find a cure. She was inspired to start raising money for the fight against ALS by selling “freezies” in her school in Grade 8.

Kaitlynn organized her first Walk for ALS team when she was 14 and has done so every year since. Her Walk is titled “Peter’s Path,” in honour of her uncle Peter, who died of ALS in 2005.